At the start of the Covid-19 pandemic, there was a sudden increase in the number and proportion of people dying at home, a trend that has persisted long after the immediate shock of the pandemic. Deaths at home accounted for 28% of deaths in England and Wales in 2023 (see chart) – an increase from 24% in 2019 and from 18% in 2004.
There has been a long-term policy goal to reduce emergency admissions to hospital at the end of life, and enable patients to have choice on their place of death, whether this is at home, a care home, hospice or hospital. However, the sudden increase in the proportion of people dying at home occurred without a planned increase in primary or community services to support patients, raising concerns about the quality of care received by individuals and their families at the end of life.
Our first report last year used data covering a population of 24 million people, linking GP clinical records, hospital data and death registrations. For people who died at home in the first year of the pandemic, we found that similar or greater volumes of care per person were provided, but with the increased number of people dying at home, there was a shift towards more care being delivered in the community.
Here we extend the analysis, using the same data source, to examine trends through to August 2023, to assess the long-term implications for end of life care for people who die at home.
Which services are used by people who die at home?
We examined services used by people who died at home, using GP clinical records to identify contacts with the GP or other clinician in the primary care team and use of medications for symptom management at the end of life. We used linked hospital data to track attendances at A&E, outpatient appointment and hospital admissions, including for elective (planned) and emergency care.
In the most recent period, from June to August 2023, more than 80% of patients who died at home had contact with the GP or primary care team during the last month of life, and around 40% were prescribed an end of life care medication by the GP. The most commonly used hospital service was outpatient care (an appointment with a specialist at a hospital), with 40% of patients attending one or more appointments in the last month of life. Just under 20% of people had one or more A&E visits, or were admitted as an emergency.
How much care did patients receive and how did this change?
There was a step-change increase in contacts with the GP or primary care team at the start of the pandemic for patients who died at home. Since then the proportion of patients with a contact has continued to increase. The number of contacts per person also increased and has remained high.
The proportion of patients prescribed medications to manage symptoms at the end of life, and the number of medications per person, both increased slightly at the start of the pandemic and remained higher than before it. A number of changes occurred at the start of the pandemic to facilitate proactive prescribing to manage symptoms at the end of life.
Taking account of the increased number of people dying at home, the higher proportion of people in contact with a GP or member of the primary care team in the last month of life, and the higher number of contacts per person, the number of contacts in primary care for people in the last month of life doubled, from 57,260 in the six months from March to August 2019 to 114,625 in the six months from March to August 2023.
Some caution is needed in interpreting this increase in activity. We know that primary care teams are increasingly deploying a wider range of staff, in response to declining numbers of GPs, and this is leading to some activities being split out across multiple contacts that may have previously been undertaken by the GP alone. The recording of GP or primary care team contacts may also include changes to the patient record, in addition to consultations. On the other hand, the increase in end of life care prescribing would be associated with higher workload within the primary care team.
Contacts with the primary care team dipped markedly in December 2022 and January 2023, when we know mortality peaked due to high levels of Covid and flu, and NHS services were under considerable pressure.
This dip in contacts has a number of possible explanations that require further exploration. In part, the dip could indicate people at the end of life being unable to access care, due to pressure on primary care services, although we note that GP appointments data do not indicate such a significant dip at this time. Another factor could be the higher number of patients dying at home, including more unexpected deaths of people not in close contact with the primary care team. As noted above, changes in recording within GP practices may also be a factor, although is unlikely to have affected just this two-month period.
Recognising that patients are at the end of life
We also examined whether patients who died had a record of palliative care needs in the last three months of life. Palliative care aims to make the individual as comfortable as possible, relieve pain and other distressing symptoms, provide psychological, social and spiritual care, and give support to families, carers and those close to the person.
Recognising that someone is close to the end of life enables care needs to be met and is an important measure of quality of end of life care in general practice. Across all causes of death, only 30 to 40% of patients had a palliative care need recorded, indicating missed opportunities to identify and address individual and carer needs. The proportion of patients who died of cancer who had this recorded was higher than for all patients, but this has declined slightly since before the pandemic to about 60%. Our findings are comparable with previous research.
Implications
It is now clear that the shift towards more people dying at home, which showed a step-change increase at the start of the pandemic, has continued. Along with this, there has been a sustained increase in contacts with GPs and the primary care team, and prescribing medication for symptom management at the end of life.
Given that these changes look set to continue, it is even more critical that more attention is paid to the quality of end of life care available to people who die at home, and to improving the capacity and skills within general practice to provide high-quality care. The evidence about what constitutes high-quality care is clear, but there are challenges in delivering this.
Previous research has identified gaps in training and expertise among primary care teams. The role of palliative care registers as an enabler of more proactive care, and the critical step of recognising when a patient is at the end of life, underpins the Quality and Outcomes Framework measure on palliative care. However, we found that two-thirds of all people who die, and two-fifths of those with cancer, do not have a record of this within the three months before death. More broadly, while integrated care systems have a responsibility for commissioning end of life care services for their population, many areas do not have a systematic approach to reviewing the quality of care in their area, and commissioning and provision of services is fragmented.
There are also structural factors to consider. Continuity of care has been identified by individuals, their families and clinicians as critical to high-quality care at the end of life, and has been demonstrated to reduce unplanned hospital admissions. But we know that the changes within primary care to improve access and address workload shortages are making continuity more difficult to deliver. While we found an increase in activity, we were not able to assess continuity of care, and cannot assume that the higher levels of GP and practice team contacts are experienced as higher quality of care.
It is vitally important that better measures of quality of care for people at the end of life are available. We are assessing whether measures could be developed from GP records. Our next blog in the series examines the end of life care received by people who died in care homes.
Methodology
The quality of care that people receive at the end of life, as well as inequalities in experiences of care, are critical policy concerns. Please find here more information about our approach to examining changing trends in service use towards the end of life: Describing our methodology
Suggested citation
Scobie S, Julian S, Bagri S, Davies M (2024) “What primary and community services do people who die at home receive?”, Nuffield Trust blog
Using health and care services at the end of life
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